{"title":"眼见为实:隐形加剧了罕见疾病患者的不平等","authors":"Darcy Richards","doi":"10.33590/emj/10149519","DOIUrl":null,"url":null,"abstract":"experts discussed how invisibility in rare disease acts as a roadblock to reducing inequalities. The session, chaired by Ana Rath, Orphanet, French and Medical Research (Inserm), France, provided insight into the inequalities, inequities, and injustice that people living with rare disease (PLWRD) face, referencing the United Nations (UN) Resolution on PLWRD 2021 1 and the UN Sustainable Development Goals (SDG). 2 The panel also highlighted how we can act at the local, regional, national, and global levels to bring rare diseases into focus, affect change, and start to bridge the inequality gaps.","PeriodicalId":90162,"journal":{"name":"European medical Journal. Urology","volume":"13 1","pages":""},"PeriodicalIF":0.0000,"publicationDate":"2022-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Seeing Is Believing: Invisibility Exacerbates Inequality for Patients Living with Rare Disease\",\"authors\":\"Darcy Richards\",\"doi\":\"10.33590/emj/10149519\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"experts discussed how invisibility in rare disease acts as a roadblock to reducing inequalities. The session, chaired by Ana Rath, Orphanet, French and Medical Research (Inserm), France, provided insight into the inequalities, inequities, and injustice that people living with rare disease (PLWRD) face, referencing the United Nations (UN) Resolution on PLWRD 2021 1 and the UN Sustainable Development Goals (SDG). 2 The panel also highlighted how we can act at the local, regional, national, and global levels to bring rare diseases into focus, affect change, and start to bridge the inequality gaps.\",\"PeriodicalId\":90162,\"journal\":{\"name\":\"European medical Journal. Urology\",\"volume\":\"13 1\",\"pages\":\"\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2022-09-20\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European medical Journal. Urology\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.33590/emj/10149519\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European medical Journal. Urology","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.33590/emj/10149519","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Seeing Is Believing: Invisibility Exacerbates Inequality for Patients Living with Rare Disease
experts discussed how invisibility in rare disease acts as a roadblock to reducing inequalities. The session, chaired by Ana Rath, Orphanet, French and Medical Research (Inserm), France, provided insight into the inequalities, inequities, and injustice that people living with rare disease (PLWRD) face, referencing the United Nations (UN) Resolution on PLWRD 2021 1 and the UN Sustainable Development Goals (SDG). 2 The panel also highlighted how we can act at the local, regional, national, and global levels to bring rare diseases into focus, affect change, and start to bridge the inequality gaps.